I Have A Question And Anyone Taking Or Has Or Is Having Any Experience With This Medication Any Advice Or And Answers Would Be Helpful | MyEpilepsyTeam

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I Have A Question And Anyone Taking Or Has Or Is Having Any Experience With This Medication Any Advice Or And Answers Would Be Helpful
A MyEpilepsyTeam Member asked a question 💭

I have a apptment with my neroligest on the 13th of July and I need to know about a medication jam totally against as am a advocate for not taking this kinda meds. I have to find a medication to replace topomax and my only option as I've researched everything is Epidiolex and am totally against it because of my advocacy and stance anyone who's on it or has a option or can provide a answer anything would be greatly appreciated. Am on onifi and briviact along with topomax now and need something to… read more

posted July 7, 2020
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A MyEpilepsyTeam Member

I’m on briviact along with tegretol slow release zonegran and lyrica/pregablin I never heard of the drug your talking about if you feel the medical marijuana is good for your epilepsy stick to your guns my nephew smokes the normal one and I know my mum used to worry it relaxes him he hardly ever drinks it’s your body x x

posted July 8, 2020
A MyEpilepsyTeam Member

Have been on many different Epilepsy Medications.
Valium, Dexedrine, Dilantin, Zerontin, Phenobarbital & Depakote/
Valproaic Acid..
Best Medication I have ever been on is TEGRETOL or Carbmiezpine, which is the Generic version.
Have been on Tegretol since three days AFTER my very first GrandMAL in 1969.~~Only once have I had an really adverse reaction to my not taking it.
IN March 1986 , my fifth Neurologist wanted to remove me off TEGRETOL.
She thought I had been on it too long~~ I told her "DON'T TRY IT"
SHE WENT AHEAD & I then had "9 GrandMALS a DAY for 1 week SOLID"

That got her fired and me onto my sixth Neurologist, who placed me back on
TEGRETOL~~ and he upped the dosage from 600MG to 800MG.
Seizures stopped again~ Last one was March 29,1986.
44+ years & Counting.

Have never heard of the two Medications you mentioned.

posted July 7, 2020
A MyEpilepsyTeam Member

If it's legally available where you are go with marijuana. ( Until I left my x husband) we never knew he had Epilepsy
(Dravet Syndrome) I guess what I am trying to say is Epidolex works to a point, but we didn't find it was a good fit for my son.

posted July 7, 2020
A MyEpilepsyTeam Member

Right now or in the recent past I was taking: Zonegran, Lorazepam, Keppra, and Lamictal. Some of them worked. Check out the side effects some of these can be, ex: A number of People have complained/mentioned about what they call "Keppra Rage". That side effect may not happen to You. Other people have told me they have no problem with it. Good Luck!

posted July 7, 2020
A MyEpilepsyTeam Member

I agree, I've also been learning about myself and my condition, education has been the best medicication.

posted August 18, 2020

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